I went to lunch yesterday with a friend of mine whose mother is in the last stages of dying from pulmonary fibrosis. She was diagnosed with it in 1998, and in 2003 her rheumatoid arthritis became bad enough for her rheumatologist to start Remicade infusions. In 2004 her pulmonary fibrosis became bad enough that she was put on oxygen.
When she went to see the rheumatologist the next time, the rheumatologist asked her why she was on oxygen. When she told the rheumatologist that she had had pulmonary fibrosis since 1998, the rheumatologist was stunned and aghast, and told her that if she had known the woman had pulmonary fibrosis she would never have started the the Remicade infusions.
It turns out that there was no mention of my friend's mother ever being diagnosed with pulmonary fibrosis in the 30 years of medical records that were shared among the doctors. The pulmonary doctor had not seen fit to inform the GP, or to tell my friend's mother that pulmonary fibrosis gets worse and worse until you die. He just told her that it would become harder to breathe.
Herewith ends my cautionary tale...
A Tragic Reminder to Take Charge of Our Own Health
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
A Tragic Reminder to Take Charge of Our Own Health
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss,
How sad - only proves that we really have to take our own health into our own hands! Back in the early 80's I went to a podiatrist for what looked like bunions on my feet - very red, distorted and sore. He didn't really give any advice. When I gathered all my medical records for a move, I happened to look back at his notes, "possible Lupus? Raynaud's?" How hard would that have been to call and mention it or send a note to my GP? Frustrations.
I wish comfort and peace for your friend's mom - it has to be so uncomfortable!
T
How sad - only proves that we really have to take our own health into our own hands! Back in the early 80's I went to a podiatrist for what looked like bunions on my feet - very red, distorted and sore. He didn't really give any advice. When I gathered all my medical records for a move, I happened to look back at his notes, "possible Lupus? Raynaud's?" How hard would that have been to call and mention it or send a note to my GP? Frustrations.
I wish comfort and peace for your friend's mom - it has to be so uncomfortable!
T
Very sad...but such a wakeup call!
My mother had colon cancer 2 x's. The 2nd time it reoccurred 15 years after the initial diagnosis. There were 2 (TWO) malignant tumors that needed to be removed along with about 7 feet of her colon.
Well....a year AFTER the surgery to remove the tumors, the surgeon called my mother in a complete panic, because after reviewing some medical notes, he discovered that he had "forgotten to remove one of the tumors"!
Unfortunately, the cancer had already spread, and my mother's health worsened until she died a year later.
Moral: Ask questions, be a pest! No one cares for you or your health MORE than you do!
My mother had colon cancer 2 x's. The 2nd time it reoccurred 15 years after the initial diagnosis. There were 2 (TWO) malignant tumors that needed to be removed along with about 7 feet of her colon.
Well....a year AFTER the surgery to remove the tumors, the surgeon called my mother in a complete panic, because after reviewing some medical notes, he discovered that he had "forgotten to remove one of the tumors"!
Unfortunately, the cancer had already spread, and my mother's health worsened until she died a year later.
Moral: Ask questions, be a pest! No one cares for you or your health MORE than you do!
Barbie
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
So very sad.
Definitely a wake-up call and it is amazing - especially among seniors - that miscommunication from doctor to doctor and the lack of questions asked by seniors, since they do not want to bother or challenge a doctor - leads to stories like we have here. It is imperative that we ask questions and just don't let things ride. It is our health and not theirs - all they have to give is time and respect for their patients.
Maggie
Definitely a wake-up call and it is amazing - especially among seniors - that miscommunication from doctor to doctor and the lack of questions asked by seniors, since they do not want to bother or challenge a doctor - leads to stories like we have here. It is imperative that we ask questions and just don't let things ride. It is our health and not theirs - all they have to give is time and respect for their patients.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
My husband had to take my daughter in to the pediatrician today for a repeat strep infection. He hasn't taken the kids to the doctor in years. When they started talking, he said "I'm sure my wife would have many more questions than me". The doc answered, "Oh yes, we know she would...But that's better than the alternative." So I have a rep for being inquisitive, pushing for answers, overly informed, etc. And apparently our doctors aren't upset by it. Phew!
Reminds me that when my hubby was in the hospital a couple of months ago.. the place was crawling with EMT students in training. Because he was the friendliest patient in the emergency room... ALL of the students "used" him to complete their assignments.. drawing blood, taking history, taking blood pressure.
As many times as he gave his history to the students.. who all wrote it down, and the nurses, who supposedly were typing it into their portable lap tops, and the doctors who supposedly typed it in the laptops.. when I got the copy of his records when he was discharged.. the medical history in the records, under each doctor's name.. was NOT the same. I was there and he gave the same information to everyone!
Who knows if our doctors pass on our records correctly.. or if they are not entered on the receiving end.. at our other doctor's offices. Then there are the doctors who don't trust each other and want to do their own diagnosis.. the whole thing is a mess... Not to mention the records that get passed on from doctor to doctor that are not even correct diagnosis.. and the records that label us "problem patients"...
grannyh
As many times as he gave his history to the students.. who all wrote it down, and the nurses, who supposedly were typing it into their portable lap tops, and the doctors who supposedly typed it in the laptops.. when I got the copy of his records when he was discharged.. the medical history in the records, under each doctor's name.. was NOT the same. I was there and he gave the same information to everyone!
Who knows if our doctors pass on our records correctly.. or if they are not entered on the receiving end.. at our other doctor's offices. Then there are the doctors who don't trust each other and want to do their own diagnosis.. the whole thing is a mess... Not to mention the records that get passed on from doctor to doctor that are not even correct diagnosis.. and the records that label us "problem patients"...
grannyh